Hi I'm new here... a little question :)

[hogwarts1]

Hi! I am doing a project for my Anatomy class about what it is like to live with kidney disease! I was wondering how kidney disease affects one's lifestyle and how to stay motivated to keep up with these changes. Thank you so much!

[Sdillow]

For me it's a learning process.,I never know what the doctor.is going to say next t.

[Mgt8]

Hi, that sounds like an interesting project.

Another good way to find out more and to get a feel for what it's like would be to read the existing posts on the various kidney desease forums here on Healthunlocked.

There is lots of information already here for you...

Type 'kidney forums' into the search box and then click on 'communities.' They will all be listed below.

You could also google 'kidney disease charities' there is more information on their websites.

Davita has a web site for kidney patients which will also be worth researching.

Davita.com

Good luck with your project...

Mgt

[rabbit01]

For me being diagnosed at 17% eGFR was devastating as I was only 48 years old and thought I was in pretty good health. The doctors had no idea what caused my CKD but suspect it was an autoimmune disease where some antibodies blocked the internals of the kidneys and caused inflammation and loss of function. I managed to last a further 4 years before starting dialysis which I do at home four times a day. One regret I have is that I did not just go sick from work when I was diagnosed and go travelling as although it is still possible it as you can appreciate is much more difficult.

You cant reverse the damage but I do think that in many cases with diet and lifestyle changes it is possible to really slow down the progression and so delay needing dialysis. Certainly stress at work for many years I feel was a major contributor to my kidney failure. Combined with not getting enough rest and sleep and basically not doing a good job looking after myself.

[WYOAnne NKF Ambassador]

I think the main problem with CKD (chronic kidney disease) is that you usually are not diagnosed until you are in Stage 3 or more. There is no pain or any other early symptoms. For me it started with high blood pressure. Doctor's started to do tests to find out why. My kidney function wound being 50%.I was diagnosed with FSGS (focal segmental glomerulus sclerosis) meaning my kidneys were getting all scarred up inside. This was 1992. It was related to strep throat I had as a child and nephritis as a result. I am not diabetic. I was on the transplant list in 1998 and had a life saving transplant in 1999. Have been living well for 21+ years.

I think when you are diagnosed, you start to learn more about your kidneys and how important they are. You learn more about your kidneys than you ever thought.

[Ladybug_05]

Hello hogwarts1!

I was born with a solitary kidney and have experienced the better part of my life living with progressive kidney disease. For me, it was natural to have dietary restrictions and I didn't think about it much until I started taking medication regularly at age 10. Once I began to take on a larger role in my healthcare, I learned a lot about how different my life really was from my friends and their families. I didn't play sports at all and I didn't eat candy. Of course, as my CKD progressed, so did my activity restrictions and dietary needs (no more cheat days for me after age 18!). I wasn't allowed to do impact sports, so much of my extracurricular activities in high school revolved around the fine arts programs. My CKD made me pour my energy into music, theater and volunteering through my school to keep active. I was also devoted to my schooling since I had the mind of "well, at least I can keep my mind sharp." My life revolved around my meds and my diet which wasn't fun though.

I developed gout and fibromyalgia at 12 and 13, and chronic fatigued followed shortly after. My kidney failed when I was 20 and in college. At that point I wasn't very symptomatic (high blood pressure) so life in general was getting hard. Going into kidney failure was terrifying, since the entire plan we had went out the window due to going from independent and relatively healthy to anorexic, confused and completely dependent on others (I couldn't walk unassisted) within two weeks of symptom onset of metallic taste, edema, confusing, memory loss and some other things. I had emergency hemo which switched to perotineal dialysis within 2 months, and it took 13 months to find a live donor match. In short, dialysis was not fun, and my transplant recovery was rough, but I'm currently 2 weeks shy of 2 years post transplant now

I think that I have a weird perspective because I've only known life with CKD. I discovered that I'm lactose intolerant and a lot of the foods that I liked pre transplant I don't enjoy anymore lol. I am completely relearning how to live my life with a transplanted kidney, so it's a lot of reprograming my brain to stop thinking about how my food choices will effect my labs. I will admit that I was close to developing a food disorder since I had to watch what I ate and my weight for so long, and it's still a struggle. My saving grace is taking comfort in that I know how the whole process will work the next time around since I'm only 23.

[Panda68]

Hi, sounds like an interesting project. I am a cancer survivor - I had cancer twice as a child and teen. Both times I was considered “terminal” but managed to survive. Then in 2001 was diagnosed with CKD stage 4.

When diagnosed with kidney disease my first thought was “ thank god it’s not cancer”. Once you have cancer nothing else health related scares you. It took a year for the diagnoses to sink in and for me to realize it could kill me.

CKD made a huge impact in my life. I have poor QOL (physical) and had to leave my job to go on disability.Leaving work was the hardest thing I’ve ever done and I can’t do many things on my own anynore.

My entire life has changed due to this disease. I joke and tell my friends “I miss cancer”. I don’t miss being sick but having had both diseases I can tell you there is a huge difference in living with them. The cancer community is strong - everyone knows someone that had cancer and everyone is afraid of getting it. There’s major campaigns, gear, countless fundraisers etc. for cancer. Infinite community support. Not so with CKD. Most important is there is a lot of money for cancer research. CKD is very underfunded. Even the centers at the hospital are dramatically diff. The cancer centers have many resources, are very modern etc.m . The kidney areas are not. In fact you still share a room on the transplant floor in my hospital. Every cancer patient room is private. I could go on and on outlining the differences.

My life is very different now. I can’t do the things I loved as easily as before and have lost most of my independence. I have other medical issues caused by cancer treatment that my kidney disease has significantly worsened.

However, despite my physical QOL being so poor, my mental health is good. I manage this by volunteering for the NKF. Volunteering has always been healing for me and has saved my spirit over the years. I volunteered and served on many Boards and committees for cancer causes for over 30 years. I simply switched and now volunteer in the kidney arena instead of cancer. It helps to give back and maybe make life for others a little better. I’m not sure how I would cope without my volunteer work.

So that’s my secret. Volunteering keeps me sane and motivated. I can’t go out as much but there are plenty of projects to work on from home. I also attend meetings via zoom. Volunteering helps you remain grateful and you also make wonderful friends.

Best of luck with school. If I can be of further assistance please don’t hesitate to ask.